“Bioethics” vs. common sense

I missed the essay below when it first appeared in the New York Times, even though the author, Sally Satel, is an old friend. It’s a story about the power of the Internet to facilitate good deeds.

Naturally, the “bioethicists” are against it. This reinforces my basic belief that “bioethics” should be punishable by prison time.

Note that the current organ donation system, of which the bioethics crowd is inordinately proud because it’s so impersonally “fair,” eliminates any incentive for families or communities to mobilize themselves to get their members registered as organ donors, because there’s no relationship between who donates organs and who receives them. It would be wonderful, of course, if everyone in the world regarded everyone else in the world as infinitely valuable. But since that’s not the case, I don’t see either the moral or the practical case against trying to mobilize particularist emotions in the service of altruistic actions. To focus on the relatively trivial question of who gets the inadequate number of cadaveric organs donated, rather than the vital question of how many people sign up as donors, strikes me as reflecting an astonishing degree of moral blindness.

But of course I shouldn’t be astonished. This is the sort of reasoning that dominates the pseudo-field of bioethics, and has, by infiltrating the Institutional Review Board process, put a serious crimp in both medical and social-scientific research.

November 22, 2005

An Internet Lifeline, in Search of a Kidney By SALLY SATEL, M.D.

On Dec. 23, 1954, a 24-year-old Coast Guard veteran, Richard Herrick, received from his identical twin a remarkable present, a kidney. On that day, doctors at Peter Bent Brigham Hospital in Boston performed the first successful kidney transplant on Mr. Herrick.

A painting commemorating the operating room scene hangs in the Countway Library of Medicine at Harvard.

I hope to receive the same gift. Mysteriously, my own kidneys retired early, a fact learned when I had routine lab tests in August 2004.

I suppose because I am a physician I did not panic at the initial news. The idea of surgery didn’t bother me really, nor did the idea of possessing a “foreign” kidney. But I had taken care of renal patients as an intern, and the thought of being on dialysis if I could not find a donor was devastating.

Nowadays, because of dialysis, renal failure is rarely a death sentence, at least early in its course. Instead, it is a jail sentence, in my dark view, anyway. Depending on the technique, the patient spends several afternoons a week in a clinic or undergoes a procedure at home that lasts all night, every night. Dialysis makes all those things you take for granted – the freedom to plan your day, a late night out or a weekend away – forbidding, if not impossible.

A transplant means a good chance of a normal life. My goal was to find a live donor, ideally before dialysis became necessary. A donor can easily manage for a lifetime with one healthy kidney, and live donor organs function somewhat better, and last longer, than organs donated from the bodies of people who have recently died.

But because live donors aren’t easy to find, I also listed my name with the United Network for Organ Sharing for a cadaver organ. Such organs are also in enormous demand. About 88,000 Americans are on the list, most waiting for kidneys. About one-fourth will receive transplants within the next year. The wait is four to five years long, and about 18 people on the list die every day.

Out of desperation, surgeons have also begun using less healthy organs. Faced with a patient on the verge of death, they might transplant, for example, a virus-infected liver from a deceased intravenous drug abuser, as was reported in July.

My search for a healthy, living donor has been frustrating. I have no siblings, let alone an identical twin. Donors don’t need to be related, but at minimum they need to share the same blood type.

Several friends said they would look into donation, but they turned out to have disqualifying medical problems or spouses who objected, or they grew scared.

I turned to matchingdonors.com, a Web site created last year to help link potential donors and recipients. Once a match is made, the process follows the standard path, with physicians at a transplant center determining whether to proceed with the surgery.

The site lists 2,400 potential donors and 100 possible recipients, and it says it has brokered 12 transplants, with about 20 more recipient-donor pairs matched and awaiting surgery. The site charges organ seekers several hundred dollars for a listing. There is no charge for donors. It waives the fee if necessary.

I posted my request. I could have written a lengthy personal essay with photos. Instead, I wrote only a handful of sentences with my bare-bones demographics, blood type and state of residence. Within a week I found someone, and barring complications – he has so far passed most of the medical hurdles to qualify – the surgery will take place this winter.

The Web site is vital for people like me. But it has also provoked criticism. One surgeon, Dr. Douglas W. Hanto, head of the ethics committee at the American Society of Transplant Surgeons, has said such brokered transplants would “undermine trust in the whole system.”

Last year, Dr. Hanto’s group asked its members to boycott privately arranged transplants. To me, this seems utter nonsense. The “system” to which Dr. Hanto refers is the united network sharing list. It is for dead donors. The Web site is for living donation.

Not only are these different pools of donors, but a live donation also takes the recipient out of the cadaver-waiting pool and thus, in my view, actually benefits people on the list because they can move up.

Most of the people who contacted me knew that they could receive no payment.

One exception was an inmate in a Kentucky penitentiary who wanted $900,000. In meticulous penmanship, he wrote: “What is life worth to you? If you do not have this kind of money, I am sorry. I cannot help you.” It was as if he were holding his kidney hostage.

Actually, I would have happily taken a healthy kidney from a killer. I have never been sentimental about the body – well, the inside of it, anyway. Kidneys are precious to their owner, but we all have a spare, and its value becomes far more momentous when it is made available to someone whose life depends on it.

I would also have gladly paid for a kidney, but that is a felony under the National Organ Transplantation Act of 1984.

The idea of an “organ market” is the buzzing third rail of transplantation practice. Many physicians and bioethicists worry that impoverished people will be financially coerced into selling their organs. To me, one attraction of such a market is that it is anonymous. Ideally, I would prefer not to know whose organ I have.

I imagine that some people who need an organ – probably most – would want to know their donors, and the closer the person the better. But what if only one relative is a good match and the entire family expects him to donate, but he really doesn’t want to?

To neutralize this form of coercion, doctors tell potential donors early in the process of testing them for biological compatibility that they will devise a medical excuse if the donors do not want to proceed.

“This happens a lot,” said a friend of mine who is a nephrologist at the Georgetown University Medical Center. I feel relieved I am not the focus of such a family drama. For friends, the social pressure is not as great, but it isn’t trivial, either.

Then there is the question of recipients’ psychological bonds with donors they already know. What if the feeling of immense gratitude turns into a sense of constricting obligation that deforms, rather than deepens, the relationship? It is not something I want to find out.

At this time, all I know about my potential donor is his age, place of residence and profession. He seems to want little from me beyond the satisfaction of his supremely generous act.

We have spoken several times, and he seems a dignified, reticent, straightforward and exceedingly considerate man. I would gladly tell him anything he wants to know, but I appreciate that he has asked me few questions.

As touched as I am by the men and women who answer online requests from people like me, I am disheartened by the finger-wagging critics whose moral compass seems cracked. “The Internet is not a place where honesty flourishes,” one critic pronounced when asked by a reporter about online matching. “Not everyone has the means to use the Internet.”

Is it really more ethical for people to go on dialysis or die while waiting for an organ?